Ok it's official, I have Sjogren's.My primary doctor ran specific. Tests for it and came back positive now he wants to refer me to a rheumatologist. I have had bouts of the flu, history of several kidney stones. But I have not, nor do I intend to be in the hospital in the past 4yrs
God willing nor in any future yrs. Any questions or concerns I should ask this rheumy? Your commoemts are greatly needed! :-\ I told my doctor about this website and he thinks its awesome!! Could use any and all advice, helllpppp!!!!
Hi Rosie :)
Welcome to Sjogren's world.
Sjogren's is a really individual disease. It does not run the same course with everyone. It's important to remember that. Reading the forum can be scary because some people are really ill - but others are not. Many have come here for information, support and advice and have then moved on because they are coping.
Before you go to a rheumy - make yourself a medical history because they will probably ask for it. Keep a symptoms diary (it helps to keep track of what started when and also when symptoms ease off) Make a list of current symptoms for the rheumy and also a list of questions. It's so easy to forget something when you are there. Take pencil and paper with you to note down answers!
Take care - Scottie :)
Bring an advocate with you to see your doctor.
How do I list my illnesses and meds?
Hi Rosie,
Let me also welcome you to the SJS World and family! Please look around the board as there are tons of topics that you just might be interested in. You'll find them by using the search engine located in the upper right hand side of this page (yeah, I tend to hang there too when I can).
Now what I've done is type up a sheet with my diagnoses on the upper left hand side of the page, and just across from there, I list the doctor I currently see for that diagnosis (also have their phone numbers). I then drew a line under the last one and then listed the meds I take (including OTC items) on the left hand side of the page and then across from each one, the doctor that prescribes it.
Also, I keep a copy of all of my lab tests and always bring a few years worth of them to each new doctor...it's a bit of a pain, but it sure does save you time and effort when filling out the "new patient" forms (always hand the typed sheet to the receptionist and let me tell you, I've had more staffs and a few doctors tell me that they appreciate the detailed info (my writing is horrible). Whew, what a sentence! ;) :D
The others have given you some good advice, and theres not much more I could add.
Anyways, good luck at the rheumy's appointment works out for you.
Take care of yourself -
Patze
Hi Rosie,
Receiving an official diagnosis can make us feel relieved and sometimes a bit frightened of the future. As Scottie said, everyone is different, and it doesn't mean that you will be very ill or have major problems. For many of us, once we are treated our lives can become better.
You can just make a short list to take to the doctor, or make it more detailed. It does seem to help if you can take a list of all the symptoms you have; gives the doctor a way to know exactly what problems you may need help treating and what you're concerned about.
Always good to take some notes of what the doctor talks with you about. At least for me I tend to forget what was said, and what I meant to ask them.
Keep us posted and take care,
Melinda
Do you or any of my new found friends have terrible pain in elbows?
Hi Rosie,
I don't often get a pain in the elbow, well, much! :) Mainly I get them in my legs from the tips of the toes to the hips and all. It can be in a joint, a burning muscle (or a dozen at a time), to a certain spot that feels like someone has taken a hot poker to it....ugh.
Ar you having problems with your elbows? One or both or a combo of? Can you give a bit more detail?
Take care of yourself -
Patze
Rosie, I did not have pain in my elbow until I fell and hurt it. It took forever to heal. When bacteria is running amuck in my system, my elbow and a few other injuries flair with pain.
Hello Rosie, Once in a while when I put my elbow on say, a table, it feels as if I have been shocked! ??? I attribute it to a compressed nerve... pain will either go up or down from the elbow. Then it leaves me with a tingling sensation. For sure my elbow gets taken off the hard surface I put it on... >:( quickly!!
Have to be careful until the issue subsides as it just comes and goes on occasion. As Joe mentioned I did take many, many years ago a bad fall on ice and landed on my right elbow though I'm just as likely to have shooting pain in R or L elbow.
Does this sound anything like yours?
newhorizons
Hi Rosie,
I have significant pain in both my elbows most of the time.
I'm having constant pain in elbows like a hot poker.is anyone having numbness and tingling on one side of face? Last week it was my right side of face, now tonight it's the left side. I also get hot poker like pain in various areas of arms and legs.
Hi Rosie,
I often get the severe pain and then the numbness on both sides of the face. The more often I get the nerve pain shooting along my jaw lines, the number that side of the face gets. Just wish I knew why (the neuro, the dentist, nor the rheumy can explain it).
My elbows hurt, but nothing like you're experiencing.
Hang in there and I sure hope that you get some answers soon.
Take care of yourself -
Patze
Hi Rosie,
I also have the painful elbows. Mine is more inside the elbow near your "funny bone" and I feel may be related to Fibro. issues, but who knows? ;) They are very tender all the time, but if I knock against something by accident, I have shooting pain that lasts for hours. Whoo-boy!
I wish you some relief and answers soon, too. :)
Take care,
Melinda
Thnx all for your advice, i'm just gonna keep smiling and laughing!!!(:
Oh, Melinda. You described what I experience very well.
If I bump a joint or even a bone it feels like I've been whacked with a sledge hammer, and I crumple up on the floor. :'( And a large purple lump will appear on that spot right away. :'( Very painful...not very funny Mr. funny bone.
Carebear,
We can relate, unfortunately! I hit my elbow on the edge of my car window I had rolled down while I was driving a while back; whoa-hee...no Mr. funny bone is not funny at all. :'(
Rosie, I hope some of our advice helps. Keep us updated and keep posting, ok?
Melinda